Beliefs about 'stroke' and 'its effects': a study of their association with emotional distress

Abstract

Emotional distress (symptoms of depression and anxiety) and emotional disorders are commonly experienced following stroke and negatively influence recovery and survival rates. Past research suggests that depressive symptoms are not directly related to lesion location and are only weakly related to actual functional and social losses. Patients' own subjective beliefs have been underresearched. This thesis was developed using cognitive theory, past research on emotional adaptation to emotional disability and observations from piloting. The main study aimed to investigate distress and a set of beliefs about 'stroke' and 'its effects', and to longitudinally test associations between specific beliefs and distress, taking into account relevant background variables. Supplementary studies aimed to explore emotional distress and disorder and relevant beliefs.

A consecutive series of 89 patients, without severe cognitive or communication impairment, were interviewed one month (baseline) after admission to a stroke unit and 81 were interviewed again at nine months (follow-up).

In the main study, distress was measured using global Hospital Anxiety and Depression scale scores. Specific beliefs about 'stroke' and 'its effects' investigated were: Attributions (Casual controllability, 'Why me?', 'Found meaning?'); Negative self-evaluations (Acceptance of disability, Negative identity change, Shame); Beliefs in recovery and recurrence (Recovery locus of control, Confidence in recovery, Recurrence fear). Background variables measured were: Demographics, Stroke severity, Disability, Pre-stroke depression, Social support and Life events.

The first supplementary study used the structured clinical interview (SCID) for DSMIV to assess depressive disorder (major or minor) and common anxiety disorders (generalised anxiety disorder, agoraphobia, social phobia, post traumatic stress disorder) and, additionally, as a means for exploring relevant beliefs. The second supplementary study involved further qualitative interviews with sixty participants at baseline to explore their own experiences and main concerns.

Associations were found between distress and most belief variables at baseline, follow-up and across time. Backward linear regression analyses for distress were used to study belief variables taking background variables into account. At baseline and follow-up these analyses supported the statistical significance of associations between distress and negative self-evaluative beliefs and recurrence fear. Across time, a role for causal controllability and acceptance of disability was supported. However, these results also highlighted the pervasive influence of a pre-stroke history of depression and of initial distress levels across time.

The SCID interview identified that many patients met criteria for depressive disorder (33% at one and 30% at nine months) or anxiety disorder (35% at one and 33% at nine months) but also yielded information regarding specific stroke-related beliefs relevant to distress versus adaptation. The qualitative interviews provided insight into patients' idiosyncratic concerns. This extended the main findings, for example by illustrating the varied nature of recurrence fear beliefs and highlighting individuals' needs to give as well as receive social support.

The SCID interview identified that many patients met criteria for depressive disorder (33% at one and 30% at nine months) or anxiety disorder (35% at one and 33% at nine months) but also yielded information regarding specific stroke-related beliefs relevant to distress versus adaptation. The qualitative interviews provided insight into patients' idiosyncratic concerns. This extended the main findings, for example by illustrating the varied nature of recurrence fear beliefs and highlighting individuals' needs to give as well as receive social support.

Emotional distress (symptoms of depression and anxiety) and emotional disorders are commonly experienced following stroke and negatively influence recovery and survival rates. Past research suggests that depressive symptoms are not directly related to lesion location and are only weakly related to actual functional and social losses. Patients' own subjective beliefs have been underresearched. This thesis was developed using cognitive theory, past research on emotional adaptation to emotional disability and observations from piloting. The main study aimed to investigate distress and a set of beliefs about 'stroke' and 'its effects', and to longitudinally test associations between specific beliefs and distress, taking into account relevant background variables. Supplementary studies aimed to explore emotional distress and disorder and relevant beliefs.

A consecutive series of 89 patients, without severe cognitive or communication impairment, were interviewed one month (baseline) after admission to a stroke unit and 81 were interviewed again at nine months (follow-up).

In the main study, distress was measured using global Hospital Anxiety and Depression scale scores. Specific beliefs about 'stroke' and 'its effects' investigated were: Attributions (Casual controllability, 'Why me?', 'Found meaning?'); Negative self-evaluations (Acceptance of disability, Negative identity change, Shame); Beliefs in recovery and recurrence (Recovery locus of control, Confidence in recovery, Recurrence fear). Background variables measured were: Demographics, Stroke severity, Disability, Pre-stroke depression, Social support and Life events.

The first supplementary study used the structured clinical interview (SCID) for DSMIV to assess depressive disorder (major or minor) and common anxiety disorders (generalised anxiety disorder, agoraphobia, social phobia, post traumatic stress disorder) and, additionally, as a means for exploring relevant beliefs. The second supplementary study involved further qualitative interviews with sixty participants at baseline to explore their own experiences and main concerns.

Associations were found between distress and most belief variables at baseline, follow-up and across time. Backward linear regression analyses for distress were used to study belief variables taking background variables into account. At baseline and follow-up these analyses supported the statistical significance of associations between distress and negative self-evaluative beliefs and recurrence fear. Across time, a role for causal controllability and acceptance of disability was supported. However, these results also highlighted the pervasive influence of a pre-stroke history of depression and of initial distress levels across time.

The SCID interview identified that many patients met criteria for depressive disorder (33% at one and 30% at nine months) or anxiety disorder (35% at one and 33% at nine months) but also yielded information regarding specific stroke-related beliefs relevant to distress versus adaptation. The qualitative interviews provided insight into patients' idiosyncratic concerns. This extended the main findings, for example by illustrating the varied nature of recurrence fear beliefs and highlighting individuals' needs to give as well as receive social support.

This study provides qualified support for cognitive theory of distress following stroke by demonstrating associations between distress and beliefs concerning 'stroke' and 'its effects' in the short- and longer-term aftermath of stroke. Over and above measures of disability, a personal sense of being unable to accept reduced capability, which some went so far to describe as 'uselessness', was related to higher levels of distress and disorder. Fear of recurrent stroke was common. Belief in the controllability of risk factors tended to be low; however a greater initial sense of causal controllability appeared protective against distress across time. These results have implications for the development of interventions to address the high prevalence of emotional distress and disorder following stroke.